[Heather66]

Hi everyone.

My daughters initial RSD started last March in her knee. She then had flare ups in her ankle and wrist. Most recently in her ankle and now in her knee again. She is complaing now of bad pain in her shoulder and says she can not use her crutches. Is it RSD in her shoulder to. I dont know that much about it yet. This disease is from hell. She is 14 and hates her life now.

Thanks
Heather

[Kyzyl363]

Hi there. Sorry to hear about your daughter's situation. I hope you can get some answers soon before things get worse, as we all know this is a time-sensitive thing.

RSD could be brought on in a person by repetitive strain or naturally spread on its own. No one knows the method for it's madness really. I would definately get it checked out right away. Try to keep her moving her shoulder as much as possible. Range of Motion and movement is key to keeping things under some control. I know it may not seem like the thing to do, or what she wants to do but it is imperative to keep it moving.

Ali is a great resource here. She has gone through a lot with this and is quite young herself. I am sure she will be posting here at some point in the near future. You may want to look over a few of her postings as she has it in her ankle and due to an fall had it spread to her arm. I am 35 and have it in my lower left leg/ankle/foot and have symptoms that make me believe it is wide spread over my whole body. I am not really giving it a label until I have a doctor review it and come to his/her own conclusions. I would suggest the same for you as not knowing can drive a person into a wild game of stress and labelling. Let your doctor tell you what he/she thinks before jumping to any conclusion and yet trust yourself enough to know, as your daughter should too.

Take Care and I will hope for the best. TTL J

[nikmcjo]

Hey Heather.

I was 14 when dx with rsd so I know how your daughter feels (almost 16 now). Mine initally started in my right foot then spread up and over to nearly full body. I cant really help much with saying yes, its spreading or no, its not but do try to get help asap. And yes, have her work on range of motion. She might hate them but it should help keep her shoulder moving. But make sure to have her want to do the moving, dont tell her to. It might seem like a little thing, but it really makes a big difference.

If your daughter needs anyone to talk to, I'm here.

Good luck to both of you.

Nikki

[ali12]

Your daughters RSD could have spread. Does she have the same symptoms in her shoulder? If so please contact your PM doctor or someone who can advice you on what to do, your doctor may want to see you. Tell your daughter to keep touching her shoulder so that it does not go hypersensitive. She will probably need to start doing gentle excersises too (thats what I did when I had a spread), it will be painful but it needs to be done.

My name is Alison I am 12 years old and I suffer from RSD in my left leg. I used to have RSD in my right arm too but it is now fully recovered, thankfully. If your daughter wants to talk then I am always here. I will send you my email address via PM.

Take care
Best wishes
Alison

[andreagibson]

Hi, my daughter Ashton is 18 and has had this monster since July in her right foot/ankle. We somehow have been lucky to keep it contained there. Scared to death it will move though. I feel like it is controlled to some degree because her environment is so controlled. We have also been lucky to have it dx early and have had pretty aggressive treatments to manage getting her mobility back. If you ever just want to talk parent to parent I would be happy to, you can PM me. It is really hard for the child/teen and for the parent and family to deal with this beast and all that comes with it.

Good luck to you.
Andrea in TX

[Lynns409]

Hi there!

I was 11 when I was diagnosed and am now 25. I had a crutch in junior high school and remember the hell of that. And the first time one of your friends asks if you are contagious. It is really hard dealing with this when you are that young. Puberty and pain? There's an evil combo!

1. Make her move. Maybe not a lot, but a little walk with the family after dinner. Mine started in my knee too, and spread downward. And part of the thigh now. But moving helps- it sounds like hell, but it really does.

2. Anti-depressants. I was clinically depressed at that age and I wish like crazy my parents had put me on anti-depressants. I don't think I would have such issues with depression now if I had been treated early on. It will improve her quality of life immensely. And the anti-depressant do have an effect on neuropathic pain.

3. Meditation or yoga. These things can be really really helpful. Check out a school of thought called MBSR- Mindfulness Based Stress Relief. I truly believe this was the single best thing I have ever done for myself in regards to improving my quality of life and how I deal with pain. (And I've had 20+ surgeries for my SCS- I was really desperate for a long time.) This changed my life. And it's not a cult! (I just realized that my praise sounded kind of like an infomercial.)

This is just a start. What kind of medicine regimen is she on? Lots of neurontin I hope. At that age I was on that and clonidine and pamelor. I believe that one of them was a patch that I wore to reduce allodynia. Although I think that I like topamax better than neurontin now.

This also sounds kind of strange but I stopped eating artificial sweeteners and it really helped my pain.

The big thing is not losing hope. And it can be really bleak at this age. That's why treating the depression is so important. It changes how you relate to the pain. At that age I also used to be really firm about the idea that the disease and I were separate- we weren't the same at all. This made everything such a battle for me. Once I tried to reconcile the idea that we both shared the same body, I started being a lot more gentle to myself. And because we both shared the same body, we were part of each other. Hating the disease meant hating myself. That doesn't mean that you can't fight the disease- it just means less self hatred. Which makes things a lot better.

If she wants to talk to someone who has navigated this rocky road- please, be in touch. I tutor girls her age and I make a pretty good mentor .
Linnie

[Desi]

My RSD started after surgery from carpal tunnal surgery. It spread from my hand, wrist up to my arm then my shoulder. Alison is so right to tell you to keep having her move it. I had to learn the hard way. Mine hurt so bad that I did nothing in the beginning. It was so stiff. I couldn't raise my right hand above my waist. I then went to PT and it was hard work, but it helped. It was like that since March of this year till the end of Sept of this year. I can now raise my arm, but the RSD is still there. I asked my doctor if it spread to my shoulder and he said yes it had indeed spread. Maybe the pain is brought on from her using her crutches?? I can't really tell you anything. Like some of the other's mentioned, get your daughter to her doc. and see what he has to say. Good luck!~Love, Desi

[wakegirl]

hey heather
the use of crutches has undoubtedly caused problems in your daughters shoulder. i dont know whether it is rsd/crps spread or if it is just muscle/cratalidge/nerve strain because all of her weight is being transfered through her upper body to relieve the strain walking caused on her lower body. i damaged my shoulders because i was on crutches because of knee injuries so often.if she is on crutches that go under her armpits you may want to ask her doc/pt for canadian (or wrist crutches) they will change the area that pressure is being applied in her arms and alter the range of motion which might help. if she is already on the canadian crutches she may need to try a walker for a little while. i know the idea of a walker for a kid is depressing (crutches are lame but doable...a walker is so far beyond lame it is down right embarassing)...she may be able to use crutches on a limited basis at school and then switch to get around elsewhere.
the shoulder problem may be a sign of disease movement but it may also be the result of repetitve movement, talk to her doctor.
if the doctor believes the rsd/crps has migrated you may want to discuss a stellate ganglion block in an effort to stop it in its tracks before the nerves are permanatly impacted...but i wouldnt take that leap without a serious discussion first.
it may be a simple fix (or as simple as a fix can be when you are dealing with this disease)...our bodies were designed to function as bipods...walking with the use of our arms was never part of the equation. check her crutches if her complaints are based on shoulder range of motion pt can probably help her.
good luck and i hope you have a wonderful holiday